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Moderator

Living with Parkinson's Disease - Meet others & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Profile picture for southwest
southwest | @southwest | Apr 29 8:05am
In reply to @kshansen "I'm thinking I need to start making notes, especially early in the morning, about how I..." + (show)
Profile picture for kshansen @kshansen

I'm thinking I need to start making notes, especially early in the morning, about how I feel at times. Do have an appointment with doc later this month.

Need to ask/tell him about bowel problems mainly in the morning. I can go from feeling somewhat constipated to having very loose stool about an hour later.
Then there are the times like when we are going to my afternoon PT appointment about 15 minutes from home and I feel like I need to get to a bathroom fast but then when I get there little or nothing happens< grrr>.

I could maybe understand if I did not have a positive feeling about the PT, the doctor(?) is very supportive and easy going and even if I have some problems with part of the PT she is always very encouraging. I do have similar problems at times when we need to go someplace, like out to eat or shopping. I never had a problem like this in the past.

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@kshansen
For PT exercises at home, I will just again put in my vote for the youtube Power for Parkinsons
For bowel issues, I found keeping daily notes to be helpful, and being patient (no pun intended).
It takes 2 or 3 days for whatever is ingested to get through the whole system, for "normal" folks' digestion. What you take today for a bowel issue may not have effects right away. So I try one thing, such as a new fiber, more water, softeners, for enough days, maybe a week, so I have a better idea of what the effects are. I try various things but individually at first. I had to learn to stand back and give myself the time to learn what works for me.

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madavidson13 | @madavidson13 | Apr 29 9:50pm
In reply to @kshansen "I'm thinking I need to start making notes, especially early in the morning, about how I..." + (show)
Profile picture for kshansen @kshansen

I'm thinking I need to start making notes, especially early in the morning, about how I feel at times. Do have an appointment with doc later this month.

Need to ask/tell him about bowel problems mainly in the morning. I can go from feeling somewhat constipated to having very loose stool about an hour later.
Then there are the times like when we are going to my afternoon PT appointment about 15 minutes from home and I feel like I need to get to a bathroom fast but then when I get there little or nothing happens< grrr>.

I could maybe understand if I did not have a positive feeling about the PT, the doctor(?) is very supportive and easy going and even if I have some problems with part of the PT she is always very encouraging. I do have similar problems at times when we need to go someplace, like out to eat or shopping. I never had a problem like this in the past.

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@kshansen
This is the first time I’ve read anything posted on this site.

I was just diagnosed with Parkinson’s in December of last year, so it’s only we’ve been a few months. I’m finding navigating this disease is not for the fan of heart.

I’ve already experienced a change in my bowel habits. I used to be very regular every morning on the dot. Nowadays, I can go several days without having a BM and I go from being constipated to loose stools. We’re trying different approaches to the changing bowel habits. At first, I thought it was my body getting used to the medication. But I don’t know now I have so many questions. Thank you for this encouraging post. At least I know I’m not alone.

MaryAnn

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2 replies
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kshansen | @kshansen | Apr 30 8:29am
In reply to @madavidson13 "@kshansen This is the first time I’ve read anything posted on this site. I was just..." + (show)
Profile picture for madavidson13 @madavidson13

@kshansen
This is the first time I’ve read anything posted on this site.

I was just diagnosed with Parkinson’s in December of last year, so it’s only we’ve been a few months. I’m finding navigating this disease is not for the fan of heart.

I’ve already experienced a change in my bowel habits. I used to be very regular every morning on the dot. Nowadays, I can go several days without having a BM and I go from being constipated to loose stools. We’re trying different approaches to the changing bowel habits. At first, I thought it was my body getting used to the medication. But I don’t know now I have so many questions. Thank you for this encouraging post. At least I know I’m not alone.

MaryAnn

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@madavidson13
Wish I knew any info, but I'm just trying to get used to the new things myself!

Right now I'm not any medication other than a probiotic that my wife thinks is a good idea, not sure where she came up with that.

The variabilty is one of the worst problems for me too!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 30 3:00pm
In reply to @madavidson13 "@kshansen This is the first time I’ve read anything posted on this site. I was just..." + (show)
Profile picture for madavidson13 @madavidson13

@kshansen
This is the first time I’ve read anything posted on this site.

I was just diagnosed with Parkinson’s in December of last year, so it’s only we’ve been a few months. I’m finding navigating this disease is not for the fan of heart.

I’ve already experienced a change in my bowel habits. I used to be very regular every morning on the dot. Nowadays, I can go several days without having a BM and I go from being constipated to loose stools. We’re trying different approaches to the changing bowel habits. At first, I thought it was my body getting used to the medication. But I don’t know now I have so many questions. Thank you for this encouraging post. At least I know I’m not alone.

MaryAnn

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@madavidson13 Hello Mary Ann, and welcome to the PD support group on Mayo Connect. I'm glad that you found this forum. It will provide you with encouragement and support. Diagnoses like PD tend to take us by surprise, even if we have had symptoms for a while.

Share as you would like, a little about the symptoms you experienced which led to the PD diagnosis. Have you had these symptoms for a long time? Which are the most troublesome for you?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 30 3:13pm
In reply to @graziellaz "@colleenyoung My husband, 83, has been told that he has Parkinsonism which takes longer to blow..." + (show)
Profile picture for graziellaz @graziellaz

@colleenyoung
My husband, 83, has been told that he has Parkinsonism which takes longer to blow into full Parkinson (?). He also has neuropathy of the legs due to diabetes (walks with a walker), short term memory loss which will probably lead to dementia. He has also had prostate cancer in 2023 and did radiation. He has had UTI since October and they finally found the strain and were able to control that with antibiotics. So a lot is going on.
In the last 8 months it seems that we are going through a roller coaster. It seems that almost every month, he seems he loses strength in his legs and can't stand up without assistance. We have gone to emergency where they treat him for his UTI. He then has to go to PT to get his muscles strength back. This time I took him toa different hospital and the Parkingson disease doctor evaluated him and said the roller coaster is probably due more to the Parkinson than UTI or any other issue. I am writing to see if other members who have Parkinson have experienced this roller coaster (in and out of hospitals and PT) and what do they do about it rather then going to the ER? No doctor so far has definitely been able to say what it is other than "it could be..." Thank you.

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Hello @graziellaz,

I'm glad that you found this forum. It really helps to have some support when you are dealing with a chronic disorder like PD. It sounds like it has been a difficult eight months for you and your husband. I would like to invite @sillyblone to post with you, as she has had several family members with Parkinson's, and she might be able to address some of your concerns.

Is your husband taking Parkinson's medication now? If so, is it helping any of his symptoms?

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1 reply
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graziellaz | @graziellaz | Apr 30 4:18pm
In reply to @hopeful33250 "Hello @graziellaz, I'm glad that you found this forum. It really helps to have some support..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @graziellaz,

I'm glad that you found this forum. It really helps to have some support when you are dealing with a chronic disorder like PD. It sounds like it has been a difficult eight months for you and your husband. I would like to invite @sillyblone to post with you, as she has had several family members with Parkinson's, and she might be able to address some of your concerns.

Is your husband taking Parkinson's medication now? If so, is it helping any of his symptoms?

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@hopeful33250

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1 reply
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graziellaz | @graziellaz | Apr 30 4:23pm
In reply to @graziellaz "@hopeful33250" + (show)

@graziellaz
Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a day for about 8 months. It has helped with his walking as his right foot doesn't get stuck as much. Since he's currently in the hospital where they have PT geared to Parkinson, the Neurologist there wants to increase the Carbidopa and wean him off the rOpinirole. I asked that she consult with his current neurologist before doing that.
How do I get in touch with @sillyblone ?

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4 replies
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sillyblone | @sillyblone | Apr 30 5:33pm
In reply to @graziellaz "@graziellaz Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a..." + (show)
Profile picture for graziellaz @graziellaz

@graziellaz
Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a day for about 8 months. It has helped with his walking as his right foot doesn't get stuck as much. Since he's currently in the hospital where they have PT geared to Parkinson, the Neurologist there wants to increase the Carbidopa and wean him off the rOpinirole. I asked that she consult with his current neurologist before doing that.
How do I get in touch with @sillyblone ?

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@graziellaz
Hello!

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Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 1 9:20am
In reply to @graziellaz "@graziellaz Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a..." + (show)
Profile picture for graziellaz @graziellaz

@graziellaz
Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a day for about 8 months. It has helped with his walking as his right foot doesn't get stuck as much. Since he's currently in the hospital where they have PT geared to Parkinson, the Neurologist there wants to increase the Carbidopa and wean him off the rOpinirole. I asked that she consult with his current neurologist before doing that.
How do I get in touch with @sillyblone ?

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@graziellaz
@sillyblone posted. Just click on "Reply" below her post, and then she can respond to your questions.

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Profile picture for sillyblone
sillyblone | @sillyblone | May 1 10:08am
In reply to @graziellaz "@graziellaz Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a..." + (show)
Profile picture for graziellaz @graziellaz

@graziellaz
Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a day for about 8 months. It has helped with his walking as his right foot doesn't get stuck as much. Since he's currently in the hospital where they have PT geared to Parkinson, the Neurologist there wants to increase the Carbidopa and wean him off the rOpinirole. I asked that she consult with his current neurologist before doing that.
How do I get in touch with @sillyblone ?

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@graziellaz
Hello. My spouse has been on Carbodopa forever.. It helps and ten sometimes it helps ok. He is in end stage. My spouse has not used Ripinorole. I know it is used for Restless Leg Syndrome. I am not sure if my brother or my father used it. Both of them were further along when they were diagnosed. I stayed on top of my spouses symptoms so as to use whatever would help. Carbo worked well for a long time. Most of these medications can cause dizziness and nausea. I would question everything and have questions ready for your physician. This is a very complex and debilitating over time. Prayers to you and your spouse. It is a tuff disease. Be his advocate even when he thinks he has it under control..I hope you both get the best treatment advice that you can. 🫂

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